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CHERUBS Medical Expert Series: CDH & Feeding Issues (Dec 2-9, 2013)

Brad Myers, MA, OTR/L Occupational Therapist will guest speak and answer your questions about feeding issues on CHERUBS CDH Family Forums during December 2nd through 9th.

Brad Myers, MA, OTR/L is the Clinical Specialist for Carolina Therapy Services and Trinity Rehabilitation in North Carolina. He has been an Occupational Therapist for 13 years with experience in pediatrics, outpatient, and skilled nursing settings. Brad is the Legal/Legislative Chair for the North Carolina Occupational Therapy Association and lives in Raleigh with his wife, Kellie and son, Carter.

Hello Brad! My 16 month old Bryson is having issues gaining weight but eats EVERYTHING and anything all day long. He always eats like he hasn't eaten at all. I've already added extra calories to his foods. He is currently getting more lab work done by GI to see if it's something to do with his body not absorbing the nutrients. He is on the toddler formula but will not drink pedisure seems like that and peas are the only things that he doesn't like. But he does seem to keep some food stuffed in his cheeks. It's like he's a chipmunk and saving it for later. hahahaaaa Does that mean anything?

Felecia Marie Woodruff- CHERUBS Volunteer
Pennsylvania State Representative, Awareness Committee Leader, Parent Advisory Board Member
Daughter, Hayden, DOB October 8th, 2009. CHERUB SURVIVOR son, Bryson, DOB July 30th, 2012 born at The Children's Hospital of Philadelphia.
21 Days ECMO, 6 Days Oscillator Ventilator, Day 32 CDH Surgery, Day 35 Got to hold him for the 1st time, 25 Days Conventional Ventilator plus 21 Days while on ECMO, 4 Days CPAP, 17 Days Nasal Cannulas, Day 90 Came Home from the NICU
Bryson's Facebook page: www.facebook.com/brysonsbattleprayerpage
My Facebook page: https://www.facebook.com/felecia.woodruff
Email: fwoodruff@cherubs-cdh.org | awareness@cherubs-cdh.org

Hi everyone! Huge thanks to Cherubs and Dawn for asking me to do this. First a little background above and beyond the bio that has already been posted. My son, Carter, was born at Duke with a LCDH in 2008. Long story short, he had a major defect with almost all of his abdominal organs herniated into his chest. He endured 18 days of ECMO, numerous surgeries, ultrasounds, etc and we were unable to hold him until he was 6 weeks old. When he finally had his surgery to repair his hernia, his doctors found 2 relatively normal lungs squeezed among his abdominal contents. To this day, I get teary eyed whenever I think about that.

Eventually, we came to the realization that Carter was going to survive, but was still unable to go home. Weeks turned into months and still no date set to return home. This was mostly due to significant feeding issues and severe reflux. Carter would take nothing.... ZERO.... by mouth and was hypersensitive to all sensory input due to the CDH, pulmonary hypertension, and isolation he experienced in the NICU. During this time, my wife and I found TONS of information online about how to keep CDH kids alive. But very little about how they are going to LIVE once their medical status has stabilized.

What complicates this issue is the fact that I am an Occupational Therapist. I quickly surrounded myself with articles, research, and colleagues with experience in feeding issues. During this time, I learned enough to be dangerous about feeding issues. Am I an expert? I'm not sure that there is a such thing because every one of these kids is completely different. But I hope that my experience will help other families who are enduring this stage in the CDH rollercoaster, which is ALMOST as stressful as the initial hospital/surgical process.

How's Carter today? He pulled out his NG tube shortly before his 1st birthday and we never put it back in. He is now a perfectly normal 5 year old - that somedays eats his mother and I out of house and home. He still has the occasional feeding issue and it took YEARS to overcome gagging, vomiting, and severe food preferences. It took a lot of therapy from a lot of great people - not to mention a lot of patience - but I think he has finally conquered the feeding AND the CDH monster. Not a day goes by that I don't count my blessings.

Finally, a quick word about any advice I share with you guys. It is not meant to take the place of sound medical or therapeutic advice. I only want to direct you to people that can help you. If your child will not eat normally, there are a million different reasons that could explain why. Please make sure you seek the advise of your medical team and, most importantly, a great feeding and therapy team, including Occupational, Speech, and/or Physical Therapy. After this week, feel free to contact me at ecuotr@yahoo.com or www.twitter.com/bradmyersotrl with anything else I can help with. Looking forward to meeting everyone!

Hi Felecia-
I had 2 thoughts when reading your post: a) you may need to add calories to his food and b) you need to consult with the medical team to make sure his calories are being absorbed correctly. As I continued reading your post, it is clear that you have already gotten both of my suggestions under your belt. My son's doctors always told us that CDH kids burn calories faster than normal kids because they have to work harder to breathe. The more severe the pulmonary hypoplasia (little lungs) and more medical issues, may make this worse. If Bryson is eating well, that is GREAT news. Now it's just time to find out where all of those calories are going. As far as storing food in his cheeks, I'm not sure that means anything, but I would definitely make sure that it's not due to any swallowing or oral motility problems. Your Occupational or Speech Therapist would be able to tell you that, if they haven't already. Good luck!

Thanks so much! We do have him on a high calorie diet and are waiting to hear back from GI to basically find out where those calories are going. He is always on the move now so it could just be he's burning them off too quickly.

Felecia Marie Woodruff- CHERUBS Volunteer
Pennsylvania State Representative, Awareness Committee Leader, Parent Advisory Board Member
Daughter, Hayden, DOB October 8th, 2009. CHERUB SURVIVOR son, Bryson, DOB July 30th, 2012 born at The Children's Hospital of Philadelphia.
21 Days ECMO, 6 Days Oscillator Ventilator, Day 32 CDH Surgery, Day 35 Got to hold him for the 1st time, 25 Days Conventional Ventilator plus 21 Days while on ECMO, 4 Days CPAP, 17 Days Nasal Cannulas, Day 90 Came Home from the NICU
Bryson's Facebook page: www.facebook.com/brysonsbattleprayerpage
My Facebook page: https://www.facebook.com/felecia.woodruff
Email: fwoodruff@cherubs-cdh.org | awareness@cherubs-cdh.org

Hi Brad,
My CDH survivor, Braden is 5 (born 3/13/0. He endured a year of feeding therapy from ages 1.5 to 2.5. Lots of gagging and texture issues but is now eating us out of house and home. One issue still remains…he's only eating the same 4 or five foods. Am I destined to be always prepare a separate meal for him? Any tips on how to get him to at least try or taste new foods? He won't go near anything that isn't familiar and even rejects his favorites if I buy a different brand. I've received a lot of criticism for being the short order cook. He's tiny but is growing and gaining weight nicely on his curve.

My grand daughter is 3 1/2 and will not eat meat no matter how small we dice it or chop it she will spit it out. She also does not like vegetables. She prefers fruit and pasta with Alfredo sauce. Any suggestions on how to get her to try other things without it being a fight to the finish. Her mom has said things like if you don't try it you have to go to bed and she says ok and gets down and goes to bed. Mom has tried making her sit at the table until she tries it and she will sit there until she falls asleep. I personally work on the theory of i will feed her what she will eat. I didn't start making my kids start trying a bite if everything until they were in school. Any suggestions would be helpful.

My son is 9 and we still have the gagging episodes on occasion, do you think this is just from his years of struggling to eat or should we take him back to a GI doctor? I have always just put it back on he doesn't like the texture of something and that is his way of dealing with it or eating to fast. He no longer takes reflux meds. Does your son still take reflux meds?

Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org

Hi Karla- My son has 2 cousins that are 7 and 4. I believe that a lot of food preference issues are just normal for kids this age. In fact, Carter eats a much more diverse diet than his cousins and many of the kids in his pre-K. So, I think some of that will just get better with age. Any lingering food textures resulting from oral hypersensitivity will hopefully just resolve themselves with time. What is most important, however, is to let the child have positive experiences with many different food textures. I hope you're not cursed to always preparing two separate meals forever. Maybe encourage him to try whatever the rest of the family is eating? Also, peer pressure has been a HUGE motivator for Carter. He eats many foods that he did not used to eat because he saw other kids eating them (ie: peanut butter). Then they stare at him in amazement when he eats broccoli!